Summary: A new study suggests that increased nightmares and hallucinations can signal the onset of autoimmune diseases like lupus. The research highlights the need for greater recognition of these symptoms as early indicators of disease flares.
Findings show that disrupted dream sleep and hallucinations often precede disease worsening, offering potential for improved early detection and management of autoimmune conditions.
Key Facts:
- Early Indicators: Nightmares and hallucinations can precede autoimmune disease flares.
- Research Basis: Study involved surveys and interviews with lupus patients and clinicians.
- Clinical Implications: Recognizing these symptoms can lead to earlier detection and better management of autoimmune diseases.
Source: King’s College London
An increase in nightmares and hallucinations – or ‘daymares’ – could herald the onset of autoimmune diseases such as lupus, say an international team led by researchers at the University of Cambridge and King’s College London.
The study, published today in eClinicalMedicine, argues that there needs to be greater recognition that these types of mental health and neurological symptoms can act as an early warning sign that an individual is approaching a ‘flare’, where their disease worsens for a period.
The researches surveyed 676 people living with lupus and 400 clinicians, as well as carrying out detailed interviews with 69 people living with systemic autoimmune rheumatic diseases (including lupus) and 50 clinicians.
In the study, the team also asked patients about the timing of 29 neurological and mental health symptoms (such as depression, hallucinations and loss of balance). In interviews, patients were also asked if they could list the order that symptoms usually occurred when their disease was flaring.
“It’s important that clinicians talk to their patients about these types of symptoms and spend time writing down each patient’s individual progression of symptoms.
“Patients often know which symptoms are a bad sign that their disease is about to flare, but both patients and doctors can be reluctant to discuss mental health and neurological symptoms, particularly if they don’t realise that these can be a part of autoimmune diseases,” said Dr Melanie Sloan, Department of Public Health and Primary Care, University of Cambridge (Lead author)
One of the more common symptoms reported was disrupted dream sleep, experienced by three in five patients, a third of whom reported this symptoms appearing over a year before onset of lupus disease.
Just under one in four patients reported hallucinations, though for 85% of these the symptom did not appear until around the onset of disease or later.
When the researchers interviewed the patients, however, they found that three in five lupus patients and one in three with other rheumatology-related conditions reported increasingly disrupted dreaming sleep – usually vivid and distressing nightmares – just before their hallucinations.
These nightmares were often vivid and distressing, involving being attacked, trapped, crushed, or falling.
One patient from Ireland described their nightmares as: “Horrific, like murders, like skin coming off people, horrific…I think it’s like when I’m overwhelmed which could be the lupus being bad…So I think the more stress my body is under then the more vivid and bad the dreaming would be.”
The study interviewers found that using the term ‘daymares’ to talk about hallucinations often led to a ‘lightbulb’ moment for patients, and they felt that it was a less frightening and stigmatised word.
A patient from England said: “[When] you said that word daymare and as soon as you said that it just made sense, it’s like not necessarily scary, it’s just like you’ve had a dream and yet you’re sitting awake in the garden…
“I see different things, it’s like I come out of it and it’s like when you wake up and you can’t remember your dream and you’re there but you’re not there… it’s like feeling really disorientated, the nearest thing I can think of is that I feel like I’m Alice in Wonderland.”
“For many years, I have discussed nightmares with my lupus patients and thought that there was a link with their disease activity.
“This research provides evidence of this, and we are strongly encouraging more doctors to ask about nightmares and other neuropsychiatric symptoms – thought to be unusual, but actually very common in systemic autoimmunity – to help us detect disease flares earlier,” said Professor David D’Cruz, Kings College London (Senior study author)
Patients experiencing hallucinations were reluctant to share their experiences, and many specialists said they had never considered nightmares and hallucinations as being related to disease flares.
Most said they would talk to their patients about nightmares and hallucinations in future, agreeing that recognising these early flare symptoms may provide an ‘early warning system’ enabling them to improve care and even reduce clinic times by averting flares at any earlier stage.
The importance of recognising these symptoms was highlighted by reports that some patients had initially been misdiagnosed or even hospitalised with a psychotic episode and/or suicidal ideation, which was only later found to be the first sign of their autoimmune disease.
One patient from Scotland said: “At 18 I was diagnosed with borderline personality disorder, and then 6 months later with lupus at 19, so it’s all very close together and it was strange that when my [borderline personality disorder] got under control and my lupus got under control was within 6 months.”
A nurse from Scotland said: “I’ve seen them admitted for an episode of psychosis and the lupus isn’t screened for until someone says ‘oh I wonder if it might be lupus’…but it was several months and very difficult… especially with young women and it’s learning more that that is how lupus affects some people and it’s not anti-psychotic drugs they needed, it’s like a lot of steroids.”
“We have long been aware that alterations in dreaming may signify changes in physical, neurological and mental health, and can sometimes be early indicators of disease.
“However, this is the first evidence that nightmares may also help us monitor such a serious autoimmune condition like lupus, and is an important prompt to patients and clinicians alike that sleep symptoms may tell us about impending relapse,” said Professor Guy Leschziner, a study author and neurologist at Guys’ and St Thomas’ hospital, and author of The Secret World of Sleep
Funding: The research was funded by The Lupus Trust and is part of the INSPIRE project (Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences).
About this autoimmune disease research news
Author: Melanie Sloan
Source: King’s College London
Contact: Melanie Sloan – King’s College London
Image: The image is credited to Neuroscience News
Original Research: Open access.
“Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study” by Melanie Sloan et al. eClinicalMedicine
Abstract
Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study
Background
Neuropsychiatric symptoms in SLE and other systemic autoimmune rheumatic diseases (SARDs) are challenging to diagnose, attribute and manage. We investigated the timings of onset of a broad range of neuropsychiatric (NP) symptoms in relation to timing of SLE onset. In addition, we explored whether NP symptoms may be a prodrome to SARD onset and to subsequent flares.
Methods
We collected patient reports of the timing of their first episode of 29 NP symptoms relative to SLE non-NP symptom onset. Surveys (n = 676 SLE patients and n = 400 clinicians) and interviews (n = 50 clinicians; and n = 69 SARD patients, including 27 SLE patients) were completed from 2022 to 2023, and analysed using mixed methods.
Findings
The majority of NP symptoms did not first present around the time of SLE onset, contrary to the prevailing view among many rheumatology participants and in the literature. For example, among patients who experienced hallucinations, 54% reported first presentation >1 year after disease onset. Patient interviews also revealed that a range of NP symptoms may be a prodrome to SLE/SARDs onset and later flares, including symptoms not represented in existing classification criteria.
Evidence of a possible prodromal syndrome was elicited from those patients who experienced hallucinations. Of these, 61% (SLE) and 34% (other SARDs) reported increasingly disrupted dreaming sleep (usually nightmares) prior to their hallucinations. In-depth interviews revealed that progression of symptoms in flares showed a high degree of inter-patient variation, whilst symptom progression was often similar in individual patient’s recurrent flares.
Interpretation
Neuropsychiatric symptoms can first present at any stage in the SLE disease course. Attributional decisions should evaluate timings of NP symptoms in relation to timing of SLE/SARD symptom onset rather than time of diagnosis due to frequent diagnostic delays. Greater recognition of prodromal/early NP symptoms indicating impending SLE flares (and potentially other SARD flares) could enable quicker flare identification and treatment.
Funding
The Lupus Trust.
